How I found the underlying cause of my CFS--anti NMDA antibodies

[Boba]

Congrats.
How long have you been bedbound?
You didn’t suffer from PEM as I see or did u? I think fatigue is a big showstopper when it comes to your advise. Anyways, I‘m happy for you!

 

[Muddy]

Congrats.
How long have you been bedbound?
You didn’t suffer from PEM as I see or did u? I think fatigue is a big showstopper when it comes to your advise. Anyways, I‘m happy for you!

I was bedbound about four months, the weakness in my extremities and the fatigue was so bad I had to sit down to pee cause I didn’t have the strength to stand and I’m a man.

and yes I would have pem. Symptoms would get worse and flare and then slowly go away each time. This doesn’t happen anymore, not anymore then for your average person.

For me getting a job, being around healthy people and good energy, focusing my mind for on new goals And practicing purpose driven thinking etc. were all major parts of my recovery. Staying active and sweating and raising core body temp were huge .

diet is tricky . I had to learn in practical terms how food affected my immune function. Different meals depending on where I’m at physically and with symptoms.

 

[vision blue]

@Muddy How did you get diagnosis of hsv in brain? did you end up doing a spinal tap? Ditto how did you diagnose it in liver and gallbladder? I think it's in my digestive track as well as brain. Intersting waht you say about high histamine. I'm extremely amine sensitive, espcially tyramine - and i think the combo of that with hsv1 is just killer and is feeding the constant recurrences. (also read a very nice study that neural overexication from any cause causes hsv to increase replication - so i think i've got that viscious cycle going on too with the amine intolrace, and dysautonomia, and excess norepinephri). I recently started a thread on what are the symptoms of Autoimmune encephalitis since it hink i have either viral encephalitis or perhaps more likely (since i'm not dead yet from the encephalitis) a lwoer level autoimmune encephalitis that finally resulted after countless recurrneces to nerves in my head for a few years.

 

[Muddy]

@Muddy How did you get diagnosis of hsv in brain? did you end up doing a spinal tap? Ditto how did you diagnose it in liver and gallbladder? I think it's in my digestive track as well as brain. Intersting waht you say about high histamine. I'm extremely amine sensitive, espcially tyramine - and i think the combo of that with hsv1 is just killer and is feeding the constant recurrences. (also read a very nice study that neural overexication from any cause causes hsv to increase replication - so i think i've got that viscious cycle going on too with the amine intolrace, and dysautonomia, and excess norepinephri). I recently started a thread on what are the symptoms of Autoimmune encephalitis since it hink i have either viral encephalitis or perhaps more likely (since i'm not dead yet from the encephalitis) a lwoer level autoimmune encephalitis that finally resulted after countless recurrneces to nerves in my head for a few years.

I never had a spinal tap done because I read horror stories of people that did. I caught HSV one and during the initial outbreak went through something very, very stressful and then all hell broke loose inside my body and brain.

histamine is excitatory. You have to flare the virus up in order for it to draw a proper immune response. Otherwise it stays latent and becomes chronic . This is where cancers of various kind come into play .

The problem is that when you flare it up and things start going acute the symptoms become a nightmarish scenario. I would become terrified of everything around me and have extreme sensory stimuli problems. I would hear voices screaming at me in the middle of the night.

 

[JES]

Light , goal oriented exercise is part of keeping a person functional . There are many bodily processes that are dependent on this exercise. If I were to lay in bed for a week I would develop extreme sensory neurological issues which would trigger flight or fight response from the slightest stimuli .

you need to get a job like delivering pizzas , that’s what I do . Putting yourself in a low stress work environment it’s amazing for your hormones and your immune system.

being alone too much and thinking about health issues or reading about them is terrible for your hormones.

I was literally in the process of being diagnosed with ALS. I had muscle fasiculations everywhere even my tongue , they got worse with emf and rf exposure . I had extreme weakness to the point where walking or pushing the pedals on a car was very challenging.

you are stuck in a state of fight or flight , you won’t heal like this .

I have been stuck in bed for almost a week when I had surgery years ago. In my experience, it was nothing compared to the OI/POTS I developed several years later. You will lose a little muscle while laying in bed for a week, but it didn't cause me any sensory or other issues, so my experience was very different.

I don't want to sound negative, but with the confidence you are making broad statements with, you sound like a doctor. I fail to make much sense of of it. You were almost diagnosed with ALS and have HSV in the brain? I don't know what to say to that, but ALS doesn't have much in common with ME/CFS, those are two quite different diseases and symptoms are very different as well.

I understand you were very ill, but the symptoms you listed do not fit well with what the average ME/CFS patient experiences. Hearing voices, twitching everywhere, tremors, slurring of speech, losing motor function and swallowing are not common ME/CFS symptoms. What I'm getting at is, since your disease is let's say at the very least atypical for an ME/CFS patient, perhaps you shouldn't assume what worked for you to get better can be extrapolated onto the majority of patients. Most of us have gone through attempts to exercise/rehabilitate a million times.

 

[Muddy]

I have been stuck in bed for almost a week when I had surgery years ago. In my experience, it was nothing compared to the OI/POTS I developed several years later. You will lose a little muscle while laying in bed for a week, but it didn't cause me any sensory or other issues, so my experience was very different.

You were almost diagnosed with ALS and have HSV in the brain? I don't know what to say to that, but ALS doesn't have much in common with ME/CFS, those are two quite different diseases and symptoms are very different as well.

I understand you were very ill, but the symptoms you listed do not fit well with what the average ME/CFS patient experiences. Hearing voices, twitching everywhere, tremors, slurring of speech, losing motor function and swallowing are not common ME/CFS symptoms. What I'm getting at is, since your disease is let's say at the very least atypical for an ME/CFS patient, perhaps you shouldn't assume what worked for you to get better can be extrapolated onto the majority of patients. Most of us have gone through attempts to exercise/rehabilitate a million times.

CFS it’s like bush league ALS. Both conditions are caused by chronic viral infections in the liver, gallbladder, pancreas and brain. People with either condition don’t get acutely sick, no seasonal cold or flu etc.

Virus goes systemic , suppressive inflammation shuts down overall immune function . Virus enters a state of latency in organs and waxes and wanes with stress , seasonal change , hormone fluctuations, histamine reactions . That’s what you gave going on , that’s CFS/ME. That’s als too except ALS is normally caused by the alpha herpes viruses , hsv 1 and 2 . Due to chronic inflammation there’s normally iron and copper deposits in various organs which cause there own set of issues .

 

[YippeeKi YOW !!]

What I'm getting at is, since your disease is let's say at the very least atypical for an ME/CFS patient

To say the least .... I've never either experienced all of those wildy diverse symptoms, or several of them at one time or another. They really seem antipodal to the usual, and mostly predictible, at least in their general expression, symptoms that have kept so many of us bedbound and baffled.

Your report of being bedbound for 4 months is interesting. At least as it relates to ME/CFS.

Most of us would give an arm, several toes and a couple of fingers to only have endured that state for 4 months .... I'm not dismissing what you went thru, but I am pointing out that it's fairly anomalous ...

perhaps you shouldn't assume what worked for you to get better can be extrapolated onto the majority of patients.

I agree. While you seem to have developed some interesting and worthwhile information, how much it applies to what ails us seems, at least at this point, to be questionable.

You might want to present it less as The Total Holy Grail Answer To All Things That Plague You, and more as, Hey, This Worked For Me, And Maybe Some Or All Of It Will Work For You, Who Knows?

Most of us have gone through attempts to exercise/rehabilitate a million times.

I agree. Gimme a nickel, etc etc etc ......

And others of us have gone thru the admitted unpleasantness and risk of spinal taps and other invasive forms of discovery to try and determine exactly what it is we're dealing with, or , more accurately, what it is we can definitely rule out ....

This doesnt make us better or worse than anyone else, but it does leave us with a fairly clear picture and grasp of what we're dealing with that goes comfortably beyond anecdotal self-diagnosis ...

 

[YippeeKi YOW !!]

CFS it’s like bush league ALS. Both conditions are caused by chronic viral infections in the liver, gallbladder, pancreas and brain.

Could you cite your sources for this?

Bad as ME/CFS is, and it can be pretty flucking awful, this comparison seems to be a bridge too far....

 

[Rebeccare]

THIS THREAD HAS BEEN RE-OPENED.

PLEASE BE RESPECTFUL OF ONE ANOTHER, AND ABIDE BY THE FORUM RULES.

 

[Wanja]

Have you gotten testing for infections that can be triggering autoummunity it antibodies causing the symptoms? Attached as a list of antibodies that you can test for, depending upon your symptoms. Any doctor can order them, they just need to be willing to do so.

Oh thanks, this will be very useful!
Which infections can trigger autoimmunity?

 

[Learner1]

Oh thanks, this will be very useful!
Which infections can trigger autoimmunity?

Many. Epstein-Barr is the most notorious for doing so, but any other herpes family infection, chlamydia, Lyme and co-infections, Cocksackie virus, etc have been implicated.

 

[Wanja]

@Wanja Funny you should ask that now. I just now finished a message yet again on this same topic. No, i haven't gotten any testing. with coivd making me a hermit (so far have not risked vaccination, i'ts all on standstill. i posted again becasue i'm getting new symptoms on top of the ones i posted about before here, and starting to think about pursuing testing yet again. title of my post is something like What are the symptoms of autoimmune enchepahalitis?

Do you have a link to your story? Am interested in the similar symtpoms.

Hey vision,

Here is the link: https://forums.phoenixrising.me/threads/i-dont-think-i-have-cfs-anymore.84255/

I will get checked for antibidys on the 07.07. In the hospital. They have a research department there for autoimmune enzephalitits

 

[Aidan Walsh]

Some day I am going to write out my entire history in one cohesive place b/c I get about 3-4 PM's per day asking me about it. BUT, I honestly do not mind and literally pray every day that something in my ramblings will help someone else!

I test positive for:

1) TPO
2) TGAb
3) anti GAD65
4) N-type Calcium Channel Autoantibody

and seven Cell Trend autoantibodies (beta-adrenergic and anti-muscarinic/ cholinergic)

Hope this helps.

Anti GAD 65 Antibodies is linked to stiff person syndrome, not CFS? I am negative to this test

 

[Violeta]

My daughter tested positive for antibodies to the pyruvate kinase receptors in the basal ganglia.

Is there a remedy for this sort of thing?

 

[Learner1]

Is there a remedy for this sort of thing?

Rituximab, Bortezimub, stem cells, exosomes, and immunosuppressants would be the go-to treatments, as with most autoimmunity.

 

[Violeta]

Rituximab, Bortezimub, stem cells, exosomes, and immunosuppressants would be the go-to treatments, as with most autoimmunity.

Thanks, Learner1. I don't take drugs. But I see what you mean.

Anyone know of natural ways to work on autoantibody issues?

 

[YippeeKi YOW !!]

Thanks, Learner1. I don't take drugs. But I see what you mean.

Like you, I avoid prescription drugs and protocols like the plague, but sometimes needs must.

I'm not sure what sort of "need" it would take to drag me back into the whirling vortex of all that, but we'll see.

In the meantime, I deal with my ME issues as best I can with varying success and with lots of research and vits, supps, herbs. Some have been successful, some have been marginal, some have been duds, but generally speaking I'm at least 50% better than I was at my worst (bedridden, semi-vegetative, desperate, suicidal, and depressed). Make that 65%.

Anyone know of natural ways to work on autoantibody issues?

Not sure I have a full enough understanding of what you're dealing with, but here's some things that helped me, once I was able to add them back into rotation. I went thru several years of being reactive to flucking everything, and I had to maintain a rigid and deeeeeply limited diet before I stabilized.

• Zinc has protective effects against autoimmune conditions in which the body starts attacking healthy cells.

• A new, long-term clinical study has found that vitamin D, omega-3 fatty acids, or both reduce the risk of developing an autoimmune disease.

• Studies by a team at the University of Michigan now suggest that 6-gingerol, the main bioactive compound in ginger root, has therapeutic effects against certain autoimmune diseases, including lupus and antiphospholipid syndrome (APS), in mice, by countering the release of neutrophil extracellular traps (NETs). Countering this are other sources that say that ginger (and it's cousin turmeric) are contraindicated in autoimmune disorcers.

• Vitamin C also has been shown to help autoimmune disorders, and help decrease inflammation, pain and other symptoms associated with arthritis, among others. Worth a shot.
• Treatment with active vitamin D has been effective in modulating immune function and ameliorating autoimmune disease, which is different from 'curing' it, not that too much can do that, altho IVIG has the best track record, along with Rituximab.
• According to an NCBI study, "Vit D inhibits B cell proliferation and blocks B cell differentiation and immunoglobulin secretion[31-32]. Vitamin D additionally suppresses T cell proliferation[33] and results in a shift from a Th1 to a Th2 phenotype."
• Green tea is an excellent source of polyphenols which are great for reducing inflammation as well as autoimmune response. Research purports to show that drinking green tea regularly can have significant benefits for people with rheumatoid arthritis, and autoimmune disease.
• One of the beneficial compounds found in green tea has a powerful ability to increase the number of "regulatory T cells" that play a key role in immune function and suppression of autoimmune disease, according to new research in the Linus Pauling Institute at Oregon State University. Altho green teat really kicked my arse when I was in that reactive-to-everything-state, I've been able to add back small amounts in my daily herbal/electrolyte 'teas', which also include ginger and cinnamon, mentioned by some sources as to be avoided.
• Magnesium helped me enormously on a lot of fronts, way beyond just the one I was taking it for initially (severe, crippling, chest-crushing heart pounding panic/anxiety attacks that lasted all flucking day and well into the night), which was an intuitive Hail Mary that actually worked !!! It's now been found to be helpful in moderating and improving the effects of autoimmune illnesses.
• I tried a number of adaptogens with very bad results. Another set of arse-kickers. I havent had the courage to try them again.

I'm attaching links to two studies and an article that look interesting. I found Hindawi to be a great source for alternative medical stuff ... and NCBI still has a good rep, pretty much, even as predatory, pay-to-publish journals swamp the market and corrupt the pool.

Remember that we're all different, and what works for one of us, or even a body of us, wont necessarily work for you. Trial thigns carefully and slowly, starting low and going slow.

Herbs to Avoid for Auto Immune Disorders
https://shopnaturalliving.com/blog/herbs-to-avoid-for-auto-immune-disorders

Immunomodulation of Autoimmune Arthritis by Herbal CAM
https://www.hindawi.com/journals/ecam/2011/986797/

Short-term low-magnesium diet reduces autoimmune arthritis severity and synovial tissue gene expression
https://pubmed.ncbi.nlm.nih.gov/28258078/

I hope some of this proves useful for you. I totally understand your resistance to becoming a lab rat, and even worse, one that has to pay a shite-load of money for the privilege.

@Learner1 really knows her stuff, so in the event that you decide to try the prescription protocol route, Learner would be a good place to start that journey, as would a few other members here with seriously deep science roots ....

 

[Violeta]

Like you, I avoid prescription drugs and protocols like the plague, but sometimes needs must.

I'm not sure what sort of "need" it would take to drag me back into the whirling vortex of all that, but we'll see.

In the meantime, I deal with my ME issues as best I can with varying success and with lots of research and vits, supps, herbs. Some have been successful, some have been marginal, some have been duds, but generally speaking I'm at least 50% better than I was at my worst (bedridden, semi-vegetative, desperate, suicidal, and depressed). Make that 65%.

Not sure I have a full enough understanding of what you're dealing with, but here's some things that helped me, once I was able to add them back into rotation. I went thru several years of being reactive to flucking everything, and I had to maintain a rigid and deeeeeply limited diet before I stabilized.

• Zinc has protective effects against autoimmune conditions in which the body starts attacking healthy cells.

• A new, long-term clinical study has found that vitamin D, omega-3 fatty acids, or both reduce the risk of developing an autoimmune disease.

• Studies by a team at the University of Michigan now suggest that 6-gingerol, the main bioactive compound in ginger root, has therapeutic effects against certain autoimmune diseases, including lupus and antiphospholipid syndrome (APS), in mice, by countering the release of neutrophil extracellular traps (NETs). Countering this are other sources that say that ginger (and it's cousin turmeric) are contraindicated in autoimmune disorcers.

• Vitamin C also has been shown to help autoimmune disorders, and help decrease inflammation, pain and other symptoms associated with arthritis, among others. Worth a shot.
• Treatment with active vitamin D has been effective in modulating immune function and ameliorating autoimmune disease, which is different from 'curing' it, not that too much can do that, altho IVIG has the best track record, along with Rituximab.
• According to an NCBI study, "Vit D inhibits B cell proliferation and blocks B cell differentiation and immunoglobulin secretion[31-32]. Vitamin D additionally suppresses T cell proliferation[33] and results in a shift from a Th1 to a Th2 phenotype."
• Green tea is an excellent source of polyphenols which are great for reducing inflammation as well as autoimmune response. Research purports to show that drinking green tea regularly can have significant benefits for people with rheumatoid arthritis, and autoimmune disease.
• One of the beneficial compounds found in green tea has a powerful ability to increase the number of "regulatory T cells" that play a key role in immune function and suppression of autoimmune disease, according to new research in the Linus Pauling Institute at Oregon State University. Altho green teat really kicked my arse when I was in that reactive-to-everything-state, I've been able to add back small amounts in my daily herbal/electrolyte 'teas', which also include ginger and cinnamon, mentioned by some sources as to be avoided.
• Magnesium helped me enormously on a lot of fronts, way beyond just the one I was taking it for initially (severe, crippling, chest-crushing heart pounding panic/anxiety attacks that lasted all flucking day and well into the night), which was an intuitive Hail Mary that actually worked !!! It's now been found to be helpful in moderating and improving the effects of autoimmune illnesses.
• I tried a number of adaptogens with very bad results. Another set of arse-kickers. I havent had the courage to try them again.

I'm attaching links to two studies and an article that look interesting. I found Hindawi to be a great source for alternative medical stuff ... and NCBI still has a good rep, pretty much, even as predatory, pay-to-publish journals swamp the market and corrupt the pool.

Remember that we're all different, and what works for one of us, or even a body of us, wont necessarily work for you. Trial thigns carefully and slowly, starting low and going slow.

Herbs to Avoid for Auto Immune Disorders
https://shopnaturalliving.com/blog/herbs-to-avoid-for-auto-immune-disorders

Immunomodulation of Autoimmune Arthritis by Herbal CAM
https://www.hindawi.com/journals/ecam/2011/986797/

Short-term low-magnesium diet reduces autoimmune arthritis severity and synovial tissue gene expression
https://pubmed.ncbi.nlm.nih.gov/28258078/

I hope some of this proves useful for you. I totally understand your resistance to becoming a lab rat, and even worse, one that has to pay a shite-load of money for the privilege.

@Learner1 really knows her stuff, so in the event that you decide to try the prescription protocol route, Learner would be a good place to start that journey, as would a few other members here with seriously deep science roots ....

Thanks, and that study looks interesting. Will read in a little bit.

This one has so many clues. Thank you!

Immunomodulation of Autoimmune Arthritis by Herbal CAM
https://www.hindawi.com/journals/ecam/2011/986797/

 

[Learner1]

@Learner1 really knows her stuff, so in the event that you decide to try the prescription protocol route, Learner would be a good place to start that journey, as would a few other members here with seriously deep science roots ....

Thank you for the compliment. However, I'm not sure why you think I'm the expert in prescription drug use and not botanicals - I regularly take andrographis, boswellia, curcumin, EGCG, flax seeds, quercetin, resveratrol. and sulforophane, along with a bunch of vitamins, minerals, and amino acids.

 

[Learner1]

Thanks, Learner1. I don't take drugs. But I see what you mean.

I have spent many thousands of dollars on some fantastic natural interventions that didn't help, only to find that FDA approved drugs were more effective. I still do use non-pharmaceutical interventions, but have learned that not everything in the pharmaceutical or the non-pharmaceutical column is a panacea.

I think to get better, it is useful to have a large toolbox of tools that one can apply to one's situation, based on good scientific rationale, as well as one's unique genetic and environmental factors.